Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Ooh la la!

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At long last, after three years of Covid delays and a bout with Omicron in July, we finally traveled abroad on vacation. This time, we went to Canada, spending a meaningful weekend with family in Toronto and a lovely week in Québec City, which feels like going to Europe without flying across the ocean. I’ve been intrigued by the capital of Québec for years, and it was well worth the wait.

We stayed in the charming Old City and walked and walked up and down the hilly streets, using the funicular only a couple of times at the end of our visit because my feet were giving out. Over a week’s course, we learned a lot about the city’s military history and First Nations. Québec City was built on a high cliff as a fortress and played a major role in the Seven Years War between France and Britain for control of Canada. In a decisive battle in 1759 on the Plains of Abraham, the British won, a turning point that soon led to British control of the territory. This, after the French laid claim to lands that had belonged to First Nation peoples for thousands of years prior. Stories unique to place and time, but all too familiar.

The Old City’s architecture features stone buildings with dormers and metal roofs that are curved at the bottom so snow falls away from the foundation. Churches abound, though we learned that here, as elsewhere, the number of church goers in this predominantly Catholic province are declining. So some churches are being repurposed, including a tasteful renovation of a church into a public library.

We saw wonderful and moving art as well, including a powerful outdoor installation near the port by Ai Weiwei of hundreds of life jackets worn by Syrian refugees, which he collected from the Greek island of Lesbos. Talented street performers juggled and balanced on unicycles in the plaza next to the posh Chateau Frontenac, a landmark hotel. Beyond the Old City’s gates, we toured the Parliament building, which is modeled after the Louvre in Paris and home of Québec’s National Assembly, and the Musée national des beaux-arts du Québec, where we saw an exquisite special exhibit of carvings by Inuit artist Manasie Akpaliapik.

And we traveled up the St. Lawrence by bus to explore the Chute Montmorency, a thundering waterfall that is slightly higher than Niagara Falls, and from there by train to Baie-Saint-Paul, a pastoral town that is home to many artists. Other highlights included a guided tour of the Musée Huron-Wendat and a relaxing cruise on the St. Lawrence. A good thing we walked so much, even as I was exhausted by day’s end, because the food is excellent and the deserts magnifique.

Everywhere we went, we were surrounded by the lyrical sound of spoken French. While I was able to understand about 80 percent of what I read in museum texts, signs, and other materials, the spoken language is very fast and also a dialect, so we had to converse in English. Nonetheless, we were both grateful to our high school French teachers so long ago, that we were able to keep up as well as we did. And, yes, people really do say “ooh la la” instead of “oh wow!” Much sweeter to my ear.

So, here are some of my favorite images from the trip. Profitez-en bien!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Quietude

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I skipped the fireworks this July 4th weekend. I just wasn’t up for it. Last week was such a heavy lift in so many ways, with so much at stake in our democracy. Al and I had no special plans for the holiday, which was fine. I had a long to-do list and needed time to think.

When I finally got up from my desk yesterday for a late afternoon walk around the neighborhood, I was expecting to hear boisterous backyard parties, music, even the pop of firecrackers. But to my surprise, it was quite still. No one else was out walking, unusual for the time of day. Some neighbors had decorated their homes with American flags. One had strung red-white-and-blue bunting from the windows. There were a few homes with a line of cars parked out front, and I smelled some barbecue. But no laughter drifted on the light breeze.

On a picture-perfect Independence Day, the loudest sounds were the chatter of house sparrows and the pensive coos of mourning doves. A few bunnies hopped across lawns. A couple of neighbors, pausing from tasks, said hello. My hydrangea burst silently into full bloom. And that was it.

I am one who enjoys moments like these. As I walked, I was grateful for the peace, the quiet, the contemplative mood. In other neighborhoods across our country, that is not a given. Nor is it a given in other countries around the world.

I hope that you and yours are able to find quietude when and where you seek it. We all need time, right now, just to be.

I’ll be taking a couple of weeks off to do just that, back later in July. Peace.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Airborne Again

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After 27 months of mostly staying put, I finally got on an airplane once again. And, just as I did in March 2020, right before Covid shut down the world, I flew to Philadelphia to see our younger daughter. We had been planning this visit for months, hoping that neither of us would contract the virus last minute and have to scuttle the trip. Thank goodness, we both tested negative on Thursday night, the evening before my Friday morning flight.

And so, I found myself back in the stressful world of air travel, with its crowds and TSA checks and worries about whether my flight would actually be on time or late or, at worst, cancelled due to lack of available aircraft or staff. Thank goodness, the weather held, the flight was on time, and I survived feeling squished in a cramped, worn-out seat. And yes, I wore a mask from the moment the shared van picked me up at home until I stepped out into the warm June morning and found my daughter, waiting for me in her car.

And we had a great visit. Photos below include some of the highlights: a walk through the Magic Garden of mosaics in South Philly, my first in-person view of the Liberty Bell, an abortion rights rally outside the National Constitution Center—one day after the Roe decision came down from SCOTUS—with Pennsylvania Attorney General Josh Shapiro (Democratic candidate in the crucial gubernatorial race this fall) and 1,500 citizens, a stroll down historic Elfreth’s Alley, and a brief but wonderful tour of Independence Hall and “the room where it happened”—debates over the Declaration of Independence, the Articles of Confederation, and what was to become the U.S. Constitution. Oh, and a lot of great meals.

Flying back on Sunday morning was a bit less smooth: my flight was delayed about 25 minutes because the co-pilot had to arrive from a separate flight, due to last minute staffing issues. Given all the SNAFUs that could have evolved from that one logistical issue, including a delayed arrival of the co-pilot leading to time-out issues for the rest of the crew (yes, this once happened to me), it was a relatively minor inconvenience. Overall, the trip was a home run.

How appropriate to visit Philadelphia at this critical inflection point in our nation’s history, how meaningful to be able to share it all with my younger daughter—and how great to feel like I can travel afar, relatively safely, once again.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Play Ball

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Today in the Northern Hemisphere, the sun appears at its highest point in the sky and daylight peaks. I always find it ironic that summer opens with a climax of daylight, which begins to ebb the very next day. But perhaps it is the best of balancing acts: as the days grow hotter through summer months, our exposure to the burning sun gradually eases.

Summer always feels full of promise. This weekend, we welcomed its nascent approach with that most summery of summertime activities, a baseball game. Our Fair City is home to the Red Sox minor league team, and we lucked out with a Father’s Day home game in our beautiful year-old stadium, on a comfortable afternoon of intermittent sunshine. Our eldest daughter joined us for a relaxing time with a great view above home plate. And we even won, 5-4!

Some people find baseball too slow. For me, especially in our hurry-up-do-it-now-before-you-miss-out society, the pace is perfect. There’s plenty of time to chat and just sit back, watch the game and all the playful side contests between innings (catch the ball and win a pie!), enjoy a ballpark snack, stretch and sing Take Me Out to the Ballgame at the seventh inning and Sweet Caroline (the Red Sox Nation anthem). I was having so much fun just hanging out with my family that I missed a few key plays, but no matter. The ninth inning packed in some real excitement, and we all had a great time.

For those few hours, I felt transported—away from all the stresses and worries of our present moment. It felt like a real mini summer vacation. I came home refreshed.

Recently I was listening to a discussion about language, how American English is full of violent metaphors to express resilience and success. A good performance is described as “killing it” or “blowing them away.” To be precise is to “nail” a presentation. We’re advised to “power through” pain or adversity, just “hang in there.” To ask someone their opinion, we say “shoot.” And that’s just a small sampling.

While baseball certainly has its own slugger language, the sport has also brought us some kinder, gentler expressions: “play ball” when it’s time to begin; “step up to the plate” to meet a challenge; bring your all when it’s “the bottom of the ninth.”

How would our world change if we framed our thoughts in baseball idioms? How would life be different if we took time to savor what’s right in front of us, enjoy the slow moments and pauses, sing and laugh more? It’s summer here in the Northern Hemisphere. No better time to find out than right now.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

The Allergy Factor

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It finally feels like spring here in Central Massachusetts . . . at least for a day. For the past week, all the flowering trees and shrubs in our neighborhood have bloomed, the maples are flowering, and the weeping cherries and Callery pears are already shedding petals, like so many pink and white snowflakes.

I always love the pastel colors of spring in the Northeast, but inevitably, all the pollen can do a number on my head. It used to be that I’d sneeze a lot and my eyes would water in response to the blossoming. This year, however, my spring allergies took a stealth turn.

Last May, as I’ve described here, I discovered scleral contact lenses to heal my very dry eyes, which were becoming more of an issue due to damage to my corneas from Sjogren’s. The lenses have helped a lot, although they’ve been harder to wear during the winter, when our house gets drier. But in recent weeks, I suddenly found that I could barely keep them in for a few hours, which evolved to only a few minutes last week.

As soon as I’d insert them, they would cloud over. Very frustrating. I wondered if my eyes were somehow rejecting them. Fortunately I was able to get an appointment last Thursday with the good folks at our local optometry college’s dry eye clinic. The students did their usual thorough intake. But when the supervising optometrist came into the exam room, the first thing he asked me was whether I had allergies.

Sure enough, that explained it. The build-up of histamines in my eyes combined with the fact that I can’t produce enough tears to dilute the resulting mucus caused a film to form on my scleral lenses. The answer so far is to try antihistamine eye-drops for about 10 days, and then try the lenses again. I’m glad to report that as soon as I started using the eye-drops, my eyes felt better and are no longer gucking up like they were before.

Hoping that I continue to make progress and can wear my lenses again. I’ll have to build up tolerance once more, but that’s certainly a manageable process. Meanwhile, the pollen mix is shifting. Maybe by the time I put in my lenses, the leaves will be fully unfurled.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.